When you have a child with a disability, you become more than just a parent. You become a caregiver. And many of us "parent-caregiver hybrids" have a lot to learn about supporting a child with a lifelong disability. 

 

Medicaid waivers can be one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based (HCBS) waivers to support people who want to live at home or in their community; "waiving" the option of living in an institution. These HCBS waivers are offered by nearly all states and Washington DC. The shift to community based living and person-centered care is an ongoing process. As is phasing out state-run institutions that are still operating in more than 30 states.  

 

Waiver programs vary greatly when you cross state lines. You can find more information about each state on the federal medicaid website. 

 

While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the Developmental Disability Waiver or the "DD Waiver" and the Commonwealth Coordinated Care Plus Waiver or the "CCC Plus Waiver." 

 

Like institutions, waivers deserve a podcast of their own. The Virginia waiver system is complicated and subject to change. The My Life, My Community website has more information and helpful links. The Arc of Virginia has an in-depth and easy to understand breakdown of Virginia Medicaid waiver programs that is updated regularly. And the Center for Family Involvement has 1:1 informational and emotional support with staff that focuses on the nuances of Virginia waivers and can walk folks through what can feel like an endless maze. If you're not in Virginia, Parent to Parent USA can connect you with supports in your own state to help you understand the systems there. 

 

Bottom line: waivers are a crucial component in accessing the supports needed to live independently. It's critical for parents to understand them; and if a waiver is needed, prioritize applying for one. That's because the waitlist is long. More than 14 thousand Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode: help and hope for people who are on that waitlist, and for their families. 

 

The Individual and Family Support Program or IFSP provides funds for those on the Virginia waiver wait list. But you have to apply. That's why we brought on IFSP Support Coordination Supervisor Rhonda Gaines and Program Manager Heather Hines to explain more. 

 

SHOW NOTES:  

IFSP Call Center Monday-Friday 9:00 am - 4:00 pm: (844) 603-9248

My Life, My Community

 

IFSP Resources

 

For more IFSP Council Information email and to apply: ifspcommunity@dbhds.virginia.gov

 

Facebook Pages for IFSP Councils: https://mylifemycommunityvirginia.org/taxonomy/mlmc-menu-zone/connect-ifsps-regional-councils

 

 

 

 

 

 

TRANSCRIPT:

01:00:07 :17 - 01:00:34 :18

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's syndrome in 2010. Not only did I have to learn how to be a mom, I had to educate myself about how to support a child with a lifelong disability.

 

01:00:34 :20 - 01:01:04 :16

Erin Croyle

Medicaid waivers were and still are, one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based waivers to support people who want to live at home or in their community, waiving the option of living in an institution. State run institutions are still operating in more than 30 states. These HCBS waivers are offered in nearly all states and Washington, DC.

 

01:01:04 :18 - 01:01:29 :14

Erin Croyle

The shift to community based living and person centered care is an ongoing process, and waiver programs can vary greatly when you cross state lines. I'll provide more information on waivers in the show notes. While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the developmental disability waiver or the DDD waiver and the Commonwealth Coordinated Care plus waiver or the CCC plus waiver. The Virginia waiver system is complicated and subject to change. I'll put more information about Virginia waivers in the show notes as well. What is important to know is that for many people with disabilities, waivers can be crucial for accessing the supports they need to live independently.

 

01:01:54 :09 - 01:02:19 :13

Erin Croyle

It's critical for parents to understand them, and if a waiver is needed, prioritize applying for one. That's because the wait list is long. More than 14,000 Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode. Help and hope for people who are on that wait list and for their families.

 

01:02:19 :15 - 01:02:39 :14

Erin Croyle

It's called IFSP, which is short for individual and family support program. And joining me today to break it all down are IFSP Support coordination supervisor Rhonda Gaines and program manager Heather Hines.

 

01:02:39 :16 - 01:02:50 :08

Erin Croyle

Hello and welcome. Although our focus today is on funding and counsels. Heather, can you take a moment to tell us a little bit about all four service components of IFSP?

 

01:02:50 :10 - 01:03:24 :16

Heather Hines

Yes. Thanks, Erin. It's great to be here. We really appreciate you giving this program some attention. We are part of the individual and family support program, as you said, IFSP, and that is part of the developmental services Division within the Department of Behavioral Health and Developmental Services. So IFSP will try to stay away from the acronyms. But yes, we'll be talking a lot about the funding program today and our state and regional councils.

 

01:03:24 :18 - 01:03:56 :02

Heather Hines

But we do have multiple components of our program. I want to tell you a little bit about this. Our primary goal is to provide supports and resources to individuals regardless of their age and their families who are waiting for a waiver slot. You did a nice job of describing what that is a little earlier. We recognize, first of all, that if you were on an 80 waivers waitlist just by the fact that you're on that waitlist, you have significant needs.

 

01:03:56 :04 - 01:04:24 :20

Heather Hines

So the level of urgency may vary from person to person and family to family, but we know that there is not a single person on that waitlist sitting around filling their fingers and saying, oh, life is easy. We also understand that navigating the system, the DD system, and knowing where to go for resources can be overwhelming. We also know that many families feel isolated and might not know anyone else going through what they're going through.

 

01:04:25 :01 - 01:04:45 :13

Heather Hines

Feeling alone, not knowing where to go, not knowing what to do next is a lot. And so it's exciting to be part of a team that can hopefully, as you said, bring some help, bring some help to those families and to the individuals while they wait for that funding. A little bit more about the different parts of our program.

 

01:04:45 :15 - 01:05:11 :15

<e